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1st appointment with respiratory consultant πŸ—£

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    #16
    Well done Linda!

    May I ask:

    What were the answers to questions 3, 4 and 5.?

    Thbanks!

    Doug
    Diagnosed April 2017

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      #17
      Thanks your your detailed explanation of your clinic appointment, not boring at all Linda. Sounds good that you can talk to and trust your neurologist. Good luck with your NIV. I hope that it’s comfortable to wear the mask and that it works well for you. Love and hugs πŸ€—, Lynne x
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

      I'm staying positive and taking each day as it comes.

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        #18
        ​​​​@Doug Carpenter...my rough interpretation of her replies. ( just to add this was about me and my situation progression)

        1. Consequences of not using NIV (thanks to the forum)... build up of carbon dioxide levels ultimately catastrophic...quality of life impaired, headaches,
        2. Benefits of using? the opposite effect...some ppl feel an immediate benefit she added a note of caution it's not a cure and eventually deterioration
        3. Is it possible to use too soon?...She felt no...as my levels show a need then sooner rather than later when it could be at a critical point
        ​​4. Does it weaken lung strength?....no because it's not really about lung strength with mnd but using NIV allows those muscles some rest
        5.Using at night only does this lead eventually to 24/7 use? ..this would be rare...and more about psychology than physical need. She did cite a case of a patient convinced he needed 24/7 when the readings suggested that's not the case.
        6.Breathing exercises (non NIV question) pointless or useful? ..the reality is breathing exercises probably make no difference however the importance of cardio health shouldn't be forgotten in her view. As the 2 systems so closely work. Meaning exercise little & often not beyond the norm but what's comfortable whilst also raising heart rate.πŸ‘

        ​​​​​​
        ​​​​​​
        Last edited by LindaB; 5 August 2021, 06:48.
        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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          #19
          Originally posted by Ellie View Post
          ... for a change 🀭😍😘
          Spooky how well you know me πŸ·πŸ˜‚πŸ˜‚πŸ˜˜
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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            #20
            Doug, if I can add to what Linda’s Respiratory Consultant said:

            Starting NIV β€œtoo early”: there are several criteria which prompt a doctor/nurse to suggest NIV use - overnight Sats, SNIP test result, pulmonary function tests, paCO2 levels or plasma bicarbonate. If a person falls into any qualifying criteria, NIV is discussed (or should be) so I don’t think it’s possible that NIV is used too early.

            Inevitable NIV daytime use: to add: at all times a person using NIV has the choice on how long they want to use it during the night or during the day or, indeed, to discontinue its use entirely. If breathlessness occurs, there are meds to ease it and any accompanying anxiety.

            Love Ellie.
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            ​

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              #21
              On breathing exercises: Linda, I would add that breath stacking, with or without an LVR bag, is good for lung health, loosening secretions and cough management.

              Did she mention breath stacking? xx
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              ​

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                #22
                She didn't talk about breath stacking although personally I've been trying to make sure I practice that through the day. It certainly helps me feel I'm doing something!

                She did talk a lot about NIV use much more than I wrote....about some people might use for a time during the day....some only night...some 24/7. Which might require a spare machine....battery etc. She added caution about just stopping NIV completely as they could as you say also support with that via medication to prevent that anxiety or distress.





                You've mentioned the other word I'd forgotten plasma bicarbonate level....πŸ‘
                Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                  #23
                  Linda, Ellie -

                  Many thanks!

                  Doug xx
                  Diagnosed April 2017

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                    #24
                    stephens niv has been stopped. hes fine. infact he seems really well - well you know. he always complained of tiredness and now he doesnt. have to say hes enjoying the olympics so distraction might be working. i dont understand it but there you go.
                    when i can think of something profound i will update this.

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                      #25
                      Hi Linda,
                      Thanks for the in-depth and far from boring post. Can i say how much I appreciated your little postscript - St Georges - Tooting. Whenever I hear everyone talking about OTs and hospital appointments and the like, I always wonder where you all are. I’m sure if i go back through enough posts I could discover this but I often wonder if anyone is talking about MY hospital etc! (Kings College , London). Xxx

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                        #26
                        Just being nosey really!

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                          #27
                          Originally posted by denise View Post
                          stephens niv has been stopped.
                          "Stopped" by whom? xx

                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          ​

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                            #28
                            After a visit to the chest clinic. They did plenty of tests and decided he was good to go without. We go back in 4-6 weeks. He's been looking good so I'm happy with this decision.
                            when i can think of something profound i will update this.

                            Comment


                              #29
                              πŸ‘πŸ˜˜
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              ​

                              Comment


                                #30
                                Er distress and anxiety? I have to disagree. πŸ‘xx
                                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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